Hi Sue
I’m not sure how frequently they will test for JCV (apparently the samples have to go to Denmark for analysis). I think it is the lymphocytes that will get checked every two months.
I don’t feel brave - but I do feel very fortunate that I am able to stay fairly relaxed about these things (not bright enough to worry :))
Yes will keep you posted
g
An update on my lymphocyte level. My blood test last week has shown my lymphocyte count has now reached 1. This is just about normal albeit on the low side. It was last November that I stopped the Tecfidera so that means it’s taken about a year to come back to normal range (which I had thought was 1.3 but the GP tests results shows normal as being between 1 and 4).
At least now I can have the flu jab.
Sue
Sounds good Sue - nearly normal 
I asked about the flu jab when lymphocytes are low. They said it’s ok as it is not a live virus. I think I’ll risk it!
I asked the Tecfidera clinic nurses a few weeks ago when my lymphocytes were still pretty low. They said it wouldn’t hurt to have the flu jab but that it might not work if there’s not enough lymphocytes to make it work (obviously I completely understand the science behind this!?!) So it seems that if it can’t hurt, then have it. That’s what I’m doing.
Sue
I have been on tec for 2 years never had a problem,no sickness no nothing but have now been called back for second blood test as while blood cells are low slightly worried can anyone explain this? M.S doesn’t affect me in day to day life am very lucky was diagnosed 30years ago maybe it’s just a glitch
Hi Smurf69 , no I would be offered a different drug, can’t remember it’s name right now but it’s another oral one. once I get back up to 1! My levels were around 0.4 -0.6 for a good few months before they dipped to .2 and i was taken off them.
The other oral therapies might not be suitable either. Gilenya lowers lymphocytes too, and Aubagio lowers neutrophils which are the other kind of white blood cells.
I’m sorry to say my lymphocytes took about a year to recover after coming off Tecfidera.
Sue
Hi Alex, my neutrophils and total wbc are also low too. I’m seeing my neurologist in Feb for a review and to discuss alternatives. Hoping it doesn’t rule others out because of blood issue. Must admit to feeling a bit nervous being off rebif.
My neuro changed me from tec to aubagio after just a 3 month break with my lymphocytes showing a slight improvement at 0.62. Its been a year since I stopped Tec and I’ve been on aubagio 9 months but my levels still havent reached 1, currently 0.76! I’ve had a small relapse recently and due to have a MRI on 1st Jan. The thing for me is I have hypothyroidism and was stable for 20 years on 125mg thyroxine daily, but recent bloods were showing a change so my dose has been increased to 150mg now. I don’t want to stay on Aubagio anymore but I’ve been asked to wait until I see my neuro after my scan to discuss the results and where we go from here… Lets see what the new year will bring! Sharon x
Hello, over the last year my lymphocytes have been - Feb 0.6, April 0.5, August 0.5, November 0.7. I have been on Tecfidera for 2 years. I want to come off Tecfidera (as the flushing for me is terrible) and try Ocvrevus. Consultant is ultra cautious and not particularly interested in her patients (tbh). Any advice would be welcome!
Hi there, my lymphocytes went down to 0.4 on Tecfidera, so had to come off it, was put back on copaxone jabs (3 x weekly) I would like to try something else but it will depend how many relapses etc they think you’re having, in many cases.